Nerves, anticipation, adrenaline: Those of us lucky enough to be high school musical alums still remember the thrill of performing on stage.
For Eliza Beutler, who is playing the lead role of Cosette in her high school's production of Les Miserables, add two other emotions: pride and relief. Pride that she’s able to walk—to dance—like her peers, and relief that doing so no longer causes debilitating pain.
"Watching her in the show, sharing her voice and presence on stage with the cast and the audience is a beautiful thing," shares her mom, Alline Beutler.
A Painful Mystery
Now 16, Eliza’s been dealing with pain for most of her life—pain centered on her left foot and her legs. As a toddler she walked with her toes pointing inward and she often complained about discomfort in her foot. “It got progressively worse and the pain became more severe as she grew,” explains Alline.
Finally, during a choir trip to New York City in the sixth grade, Eliza’s pain hit a tipping point. “I got a phone call,” remembers Alline. “Eliza’s left foot had become so painful that she stopped walking altogether.”
Alline and her husband, Dan Beutler, had begun searching for the cause of their daughter’s pain years before. Her discomfort was only one of their concerns. Physically, Eliza simply couldn’t keep up with her peers. She lagged behind her older sister, Claire, and her parents during family activities. Answers continued to elude doctors in their home state of Michigan.
“They were all trying to treat her pain and I kept saying ‘That’s fine, but I’m concerned about why the pain is happening in the first place,’” says Alline.
From Michigan to Minnesota for Gait Analysis
During their frustrating search for answers, Eliza’s limited mobility—she relied on crutches or a knee scooter—began to affect her emotionally. Besides her inability to participate in many types of activities, she also dealt with skepticism. “Some of my peers thought I was faking or looking for attention, so that was hard,” adds Eliza. “My friends knew my pain was real and they’ve been my support system.”
The Beutlers learned of Gillette Children’s Specialty Healthcare in part through their enthusiasm for Michigan State University (MSU) Spartan football. “My good friend from MSU had roomed with Mike Schwartz in college,” explains Eliza’s dad, Dan. “Mike comes to Spartan games periodically and we’d gotten to talking about Eliza’s pain.”
Michael Schwartz, PhD, directs bioengineering research for the James R. Gage Center for Gait and Motion Analysis at Gillette. He told Dan to send Eliza’s medical records and video footage of her walking—he would review it with Tom Novacheck, MD, who directs the center.
“Dr. Novacheck and Mike got back to us quickly. They said they were pretty sure they knew what the problem was and that they’d like to see Eliza in the gait lab,” says Dan.
The Beutlers flew to St. Paul, Minnesota for Eliza’s gait analysis at the end of her seventh grade year. “I was a little skeptical,” acknowledges Alline. “We had been searching for answers for so long, and I didn’t know about Gillette or its reputation.”
The day after Eliza’s gait analysis, the Beutlers met with Novacheck. During the appointment, he explained the cause of Eliza’s pain: a coming-together of ligament laxity (also called hypermobility) and a lower extremity deformity. Eliza and her family found relief in knowing, with the gait lab’s concrete data, that the diagnosis wasn’t just a guess.
“Because others who examined Eliza didn’t have sophisticated gait analysis, they didn’t understand the magnitude of her underlying problems,” says Novacheck. “As a result, her pain was worsening and her ability to be involved in typical activities was declining rapidly.”
Novacheck recommended Eliza undergo three simultaneous procedures on the left side—two osteotomies in the foot and a tibial derotation osteotomy—to improve alignment in her bones and alleviate her pain. “After the surgery I realized I could walk straighter and with less pain in my feet. Finally walking again felt amazing!” says Eliza.
With Data Comes Trust
As a result of her first surgery, the debilitating pain in Eliza’s left foot was relieved and she was able to participate in Beauty and the Beast. But Eliza still dealt with significant pain in both knees. So, two years later, she underwent a second major surgery, a distal femoral osteotomy, to correct knock-knees and abnormal femoral twists.
Less than one year after her second surgery, Eliza took the stage as Cosette in Les Miserables. "Before we came to Gillette the first time, not only was she in severe pain and had limited mobility, she was depressed and withdrawn. She doesn't seem to be slowed down by much of anything anymore. Her strength and confidence have grown and she obviously has more joy in her life," says Alline.
Eliza’s parents describe their Gillette experience, which has now spanned more than three years, as comforting. That’s largely because of Novacheck’s diagnosis and treatment recommendation, firmly rooted in science. “We trusted the information from the gait analysis and we felt very comfortable entrusting Gillette with her care,” shares Alline.
Novacheck, for his part, calls Eliza’s situation unique because, unlike most patients seen at the gait lab, she doesn’t have cerebral palsy. “The depth of knowledge we have developed surrounding gait analysis in cerebral palsy patients has led to better understanding of all mobility issues, including Eliza’s,” he says. “Pain and inability to engage in typical activities have adverse effects on children.”
A Full Life of Music and Dance
Besides an end to her pain, Eliza’s surgeries have meant returning to family activities, such as hiking, and participating in musicals. It’s also meant the return of her enthusiastic personality. During a follow-up visit, she shared why she felt confident going into her most recent surgery a month earlier.
“Because the first one had been so successful. I’m going to walk again—and walk well, and dance well for musicals, and just be myself a little bit more,” says Eliza. “I’m in a lot of musical things. The music aspect keeps me grounded.”
In an effort to give back to Gillette, Alline and Dan Beutler joined the Gait and Motion Analysis Outcomes Committee. The advisory group builds awareness and raises funds for gait analysis research. “I hope that going into the future I can make sure these services are available for other kids who need help like Eliza did,” says Alline.